Monday, May 1, 2017

CF Awareness Month Day 1 - Diagnosis

So I've always wanted to do these blog topics during CF Awareness month, but always end up super busy around this time of year and don't get around to it.  This year May looks to be a lot more wide open, so I thought I'd give it a try! :)  Also, I've looked and looked and can't find anywhere that these days and topics are listed on a website, so I'm basically straight-up stealing the images from other people's blogs who have done them before.  Hopefully I'm not infringing on any copyrights!

UPDATE:  After my original post, I spoke with my mom about the details around my diagnosis again.  Turns out I had several points of the story pretty wrong, haha (oh, those fickle two-year-old memories...).  So below, please find my updated diagnosis story with input from the mom. :)

The year was 1988 - high water jeans and Madonna had taken over the world, and in November of that year, my parents' lives were about to change forever.  Once I reached the age of two and a half, my pediatrician decided to run the test for cystic fibrosis because I'd been having lots of asthma symptoms and my mom had noticed a few strange things about my eating habits.  I was actually a pretty sturdy and healthy toddler, but I was hungry ALL the time, and apparently I pooped a lot, and the stools were often oily-looking.  My mom was feeding me all the time, but I was a good, healthy weight.  My pediatrician didn't really think there was any chance I would come back positive for CF, but the asthma symptoms and oily stools were enough of a signal she felt she should at least rule it out.  Everyone was VERY surprised when the sweat test came back positive.

While I don't remember the initial sweat test, I do have a few "flashback" memories to the day of the more extensive testing.  In fact, that day and the days that followed are probably my very earliest true memories.  For some reason my dad couldn't come that day, so my wonderful grandfather came with me and my mom.  I remember getting x-rays done and sitting in my mom's lap in the waiting room with a sucker.  Immediately after my diagnosis was confirmed, I was admitted into the hospital for IV antibiotics, breathing treatments, and observation, not because I actually needed it but because it was standard protocol at the time.  I was admitted again two months later for asthma symptoms (aka, increased cough.  This could have been my CF, or it could have just been the asthma I inherited from my dad's side of the family.  We'll probably never know).  Luckily, I had a good long stretch after that, and didn't need to be hospitalized again (for a CF exacerbation) until I was 25.  

I have a few random flashbacks from those initial admissions, too - I remember giving the nurses hell when they tried to put an IV in, haha.  Seriously, I don't think I've ever fought so hard and with so much terrified and righteous anger again in my entire life.  They ended up taking me down the hall to a room where several of them held me down while I was kicking and thrashing so another one could insert the IV.  My mom recently confirmed this memory, and said the whole process was actually so horrible that she filed a complaint with the hospital afterward.  I also remember lying in a crib with REALLY high railings, and also going down the hall with my friend (who also had CF) to get chocolate milk out of the fridge.  And I remember shortly thereafter my mom starting to sprinkle my enzyme balls in applesauce at every meal.  For the most part, I was pretty cool about the whole thing. :)  My mom says that the very first day I had to start taking the enzymes, she sprinkled some in applesauce, called me over to her, and said "These are going to make your tummy feel better."  My response?  "Ok!"  And life went on.  Thankfully, I never fought my parents on taking pills, and I always loved eating, so weight was never an issue like it is for some CF patients.

Really, life with CF is all I've ever known, and has been a part of who I am since I can remember.  I'm sure my parents were terrified to get this diagnosis of their precious only child - back then, the median ago of survival was only around 14 years old.  But thankfully God placed me with two extremely determined parents, especially my mom, who more or less dedicated their lives to making sure I had a full one to live.  And, so far so good - this month I turn thirty-one, I'm married, I'm an attorney, and I'm definitely still kicking!  

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